Judy Foreman

Nationally Sindicated Fitness, Health, and Medicine Columnist

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Sorting out the benefits, risks of HRT

July 5, 1999 by Judy Foreman

It’s never been easy sorting out the pros and cons of taking estrogen supplements at menopause. Women have always had to weigh the many benefits — reduced hot flashes, lower risk of heart disease, osteoporosis, colon cancer, and perhaps Alzheimer’s — against the modest but distressing risks, notably an increased chance of breast cancer and blood clots.

But lately, with every new study, it’s gotten more complicated.

About a month ago, researchers studying 37,000 Iowa women reported what looked like reassuring news: Hormone replacement therapy was not linked to an increase in many common types of breast cancer. But it was linked to a higher risk of other breast cancers, though these had better prognoses to begin with.

Then, about two weeks ago, California researchers reported that one of the new “designer estrogens,” a drug called raloxifene (Evista), reduced breast cancer risk by an impressive 76 percent in 7,705 older women with osteoporosis.

So should women now toss out their Premarin and switch to the new stuff?

It depends on many factors.

It’s no longer just: Estrogen, yes or no? It’s estrogen, for how long? It’s should you start at 50, when hot flashes and bone loss are worst, then stop before breast cancer risk kicks in?

Should you switch to low-dose estrogen? Or wait until age 65 to start? Or take raloxifene instead, which, unlike estrogen, can be used without another hormone called progesterone and does not raise the risk of uterine cancer?

“We’re getting more and more information, but that’s raising more and more questions, though it also means we have more choices,” says Dr. Nananda Col, an internist at New England Medical Center.

Next week in the Archives of Internal Medicine, Col’s team will publish a sophisticated decision-analysis technology to guide hormone replacement decisions.

She says the first question every woman should ask is why she would take any hormone at menopause. If the answer is to control hot flashes and vaginal dryness, estrogen may be the best bet — for a few years, until symptoms have subsided.

But if osteoporosis is your main concern, the equation may change, notes Dr. JoAnn Manson, co-director of women’s health at Brigham and Women’s Hospital.

Both raloxifene and estrogen increase bone density a little (1 to 2 percent over several years, with estrogen somewhat more effective than raloxifene). But since raloxifene decreases breast cancer risk, it may be a better choice for women who are particularly worried about getting the disease.

On the other hand, if you don’t want to take any estrogenic hormones, there are other options (besides exercise, which women should do anyway.) The prescription pill Fosamax and a nasal spray called Miacalcin can boost bone density. (And San Francisco researchers recently reported that parathyroid hormone does, too, but it’s still experimental.)

The key point is that the most rapid bone loss occurs right at menopause, so women should not put off a decision on treatments to prevent osteoporosis. If you do choose to skip hormones or other drugs, it’s important to get enough calcium — about 1,500 milligrams a day — and 400 to 800 IUs of vit D, too.

Suppose, though, that heart disease is your major concern. Then estrogen may be a good choice. But if you don’t want to take it and your cholesterol is high, you have another option: “statins,” the cholesterol-lowering drugs.

For its part, estrogen raises HDL, or “good” cholesterol, lowers LDL, or “bad” cholesterol, and keeps total cholesterol under control. It also seems to prevent heart attacks. By contrast, raloxifene helps with total cholesterol, but not HDL.

Okay, say amidst all this, you’re also petrified of breast cancer, as many women are, even though women tend to vastly overestimate their risk of breast cancer and underestimate their risk of heart disease, which kills six times as many women.

If you’re at high risk for breast cancer, it makes sense to talk to your doctor about taking tamoxifen, a kind of anti-estrogen that appears to help prevent the disease.

And if you want to take regular estrogen, consider the following. In 1997, British researchers combined data from 51 studies and concluded that estrogen raises breast cancer risk about 35 percent if taken for five years or more.

But how much of an increase is that, really? “Not very much for the average woman,” says Dr. Eric Winer, director of breast oncology at Dana-Farber Cancer Institute.

If you’re a 50-year old woman, your risk of developing breast cancer in the next 10 years is 2.67 percent. Taking hormones for five years raises this by 35 percent, to 3.6 percent. In other words, Winer says, “it doesn’t make sense to worry excessively if you take it for a couple of years to fight hot flashes.” Furthermore, breast cancers are not all equally likely to be fatal or to be spurred by estrogen supplements.

In fact, one of the most puzzling things about the apparently reassuring Iowa study, is that hormone use was linked to some types of breast cancer but not others. The study of 37,000 women is the first to analyze cancer risk and hormone use by the type of breast tumor, notes Thomas A. Sellers, a co-author and epidemiologist at the Mayo Clinic.

But the results don’t tally up neatly. The researchers found the greatest risk of cancer among hormone users was in tumors with the most favorable prognosis, that is, tumors that under the microscope are classified as tubular, mucinous, or papillary.

Many of these tumors are estrogen-driven, but so are many tumors with less favorable prognoses.

The Iowa study also doesn’t fit with the overall evidence, notes Manson. In fact, not only is there a 35 percent increased risk of getting breast cancer if you take hormones for five or more years starting at menopause, there’s a comparable increased risk of dying of it if you take hormones for 10 years or more.

That suggests, Manson says, that minimizing the duration of hormone use is a wise idea. One approach is to take hormones for five years or less at onset of menopause, then start again at 65, when the risk of heart disease begins to rise more steeply.

“Another strategy is to use hormones for less than five years around menopause, then switch to raloxifene,” though follow-up data on raloxifene only extends about three years.

It may also make sense, she says, to start on low-dose estrogen (0.3 milligrams a day) instead of the usual dose (0.625 mg a day). Some studies have shown that low-dose estrogen protects bones as well as the standard dose. It’s less clear how well lower dose estrogen affects cholesterol.

If you do try lower-dose estrogen, however, keep track of potential bone loss with bone density testing, says Dr. Isaac Schiff, chief of the Vincent Obstetrics and Gynecology service at Massachusetts General Hospital.

And what about waiting to take estrogen until you’re 60 or 65, when preventing heart disease becomes more of a concern? It depends on your risk profile. If you have a family history of heart disease, if you’re sedentary, overweight, diabetic, have high cholesterol and smoke, you are at higher risk of heart disease regardless of age, so it makes sense to consider estrogen.

The bottom line is that, because the research is rapidly evolving, read all you can, talk to your doctor and remember that you can — and should — keep re-assessing your decision as your health status, and age, change.

Orphan diseases leave patients on their own

June 28, 1999 by Judy Foreman

Doctors have a saying: When you hear hoofbeats, think horses, not zebras, which means: if you’re stumped by a diagnosis, think of the most likely cause, not the rarest or most exotic.

But for 20 to 25 million Americans, the problem really does turn out to be zebras, that is, one of more than 6,000 rare diseases. And that rarity can be a huge problem, far beyond whatever emotional and physical toll the disease itself takes.

Geri Malter, for one, has “the wrong kind of cancer.”

When Malter, 54, an ultrasound technologist from West Newton, sees her doctor at the Dana-Farber Cancer Institute, she looks in at the beautiful new radiation oncology suite. But that’s mostly for women with breast cancer, not retroperitoneal liposarcoma, the rare fatty tissue cancer that’s growing in the back part of her abdomen.

She’s had 13 surgeries in the last 16 years to remove the tumor and faces more soon because it keeps growing back and chemotherapy doesn’t seem to help. Yet there’s nobody out there marching for her, or holding rallies or lobbying congressmen.

“I tell friends that if I can hold on and keep fighting this disease, that there just might be a ‘magic bullet’ for me,” she says. But in reality, she adds, “without research, there can’t be progress.”

Joanne Zeis, 43, an Uxbridge woman who works in her husband’s market research firm, has the wrong disease, too – a rare condition called Behcet’s syndrome, a chronic inflammatory disease that affects her blood vessels.

“It’s very frustrating” having something nobody’s heard of, she says, adding that many people simply don’t believe she’s sick. “Eventually, you learn not to talk about it. All that happens is you look like you’re trying to get attention.”

It’s hard enough getting any bad news from the doctor. But it’s even tougher if the doctor can’t figure out what’s wrong.

In fact, for many rare diseases, the first big hurdle is getting a diagnosis. “Most doctors are geared toward sore throats, blood pressure, and arthritis,” says Abbey Meyers, president of the National Organization for Rare Disorders (NORD), a nonprofit group that compiles information on 1,100 diseases.

“People go from doctor to doctor,” she says. Often, there’s no simple test.

For a third of people with rare diseases, in fact, it takes one to five years to get a diagnosis, says Stephen Groft, director of the rare diseases office at the National Institutes of Health. For 15 percent, it takes more than five years.

That uncertainty is so stressful, says Meyers, that people often feel relieved when they finally get a diagnosis – even if their disease is fatal.

“To at least know what you have is helpful,” agrees Linda DeBenedictis, founder of the New England Patients’ Rights Group. People feel anxious when they can’t put a label on symptoms, she says. It becomes “a psychological issue.”

After diagnosis, the next challenge is trying to learn more about a disease that most people, including most doctors, know nothing about. Some patients are simply handed a photocopy of a paragraph from a medical textbook, says Meyers. Increasingly, however, many are finding the information they need from a growing number of sources, including NORD (www.rarediseases.org), on the Internet.

That may be empowering, but the other side of the coin is that for many rare diseases, “there’s no treatment,” says Meyers. For some, there are clinical trials of experimental drugs, but finding them is tough, though the government’s website (http://rarediseases.info.nih.gov/ord) can help.

Even if you do find a clinical trial, the logistics of participating can be daunting. “If you’re lucky enough to get into a clinical trial, you can bet there’s none near your house,” says Meyers. “Most people with rare diseases cannot even find a doctor nearby to take care of them, so they have to travel long distances just to see a specialist.”

Some private pilots fly patients long distances for experimental treatments, but so far, most “major airlines are not stepping up to the plate,” she says.

Then there’s the medication issue. Even when drugs exist for a rare condition, they can be expensive and may not be included in the lists that health insurers use to decide which drugs to pay for.

Thanks to the Orphan Drug Act of 1983, drug companies have an incentive to develop drugs for diseases that affect 200,000 people or fewer. They get seven years of exclusive marketing rights for an “orphan” drug, starting from the date the drug is approved by the government.

But because so few people will ever buy an orphan drug, companies often charge a lot. Genzyme, for instance, makes a drug called Ceredase and a newer one called Cerezyme for Gaucher’s disease, a rare congenital disorder of lipid metabolism. But only 2,500 patients worldwide take these drugs, which cost $150,000 to $170,000 a year.

Rare diseases get short shrift on research funding, too, advocates say, though proving that is tough because the government does not track spending on many rare diseases.

(Funding isn’t exactly even-handed for common diseases, either, in part because patients with more political clout steer research dollars toward their diseases. Lung cancer, for instance gets $800 in research dollars per patient death, compared with $7,500 for breast cancer and $30,000 for HIV and AIDS, some data suggest.)

But for many people with rare diseases, perhaps the toughest problem is the isolation.

“People don’t know of anyone else who’s ever had it,” says Ed Madara, director of the New Jersey-based American Self-Help Clearinghouse. Since 1986, he says, the number of diseases with self-help groups has swelled from 332 to more than 700, a sign that doctors are increasingly able to identify rare diseases and that patients with them are getting more active.

Still, many people find that if they want support for coping with a rare disease, they have to drum it up themselves.

When Ben Cantor, 89, a retired photographer in Belmont, was diagnosed with ataxia, a coordination disorder that impairs walking, balance, and speech, he wanted a support group. There was none, so he formed his own with a fellow patient. It’s been “fantastic,” he says. “We act like a family – everybody can speak. Everything is confidential.”

Cynthia Wisniewski, 44, of Wayland, whose 6 1/2-year-old son was diagnosed with a form of ataxia called ataxia telangiectasia when he was a year old, can echo that.

“At the time we were diagnosed, there was not much on the Internet,” she says. So she and her husband banded together with three other families with kids with the disease. Those ties have been “extremely therapeutic for us,” she says.

Geri Malter, the sarcoma patient, puts it this way: What people with rare diseases really need is “attention and emotional support,” she says. “It’s just plain lonely to have a disease that nobody talks about.”

Patients banding together

Doctors have a saying: When you hear hoofbeats, think horses, not zebras, which means: if you’re stumped by a diagnosis, think of the most likely cause, not the rarest or most exotic.

But for 20 to 25 million Americans, the problem really does turn out to be zebras, that is, one of more than 6,000 rare diseases. And that rarity can be a huge problem, far beyond whatever emotional and physical toll the disease itself takes.

Geri Malter, for one, has “the wrong kind of cancer.”

When Malter, 54, an ultrasound technologist from West Newton, sees her doctor at the Dana-Farber Cancer Institute, she looks in at the beautiful new radiation oncology suite. But that’s mostly for women with breast cancer, not retroperitoneal liposarcoma, the rare fatty tissue cancer that’s growing in the back part of her abdomen.

She’s had 13 surgeries in the last 16 years to remove the tumor and faces more soon because it keeps growing back and chemotherapy doesn’t seem to help. Yet there’s nobody out there marching for her, or holding rallies or lobbying congressmen.

“I tell friends that if I can hold on and keep fighting this disease, that there just might be a ‘magic bullet’ for me,” she says. But in reality, she adds, “without research, there can’t be progress.”

Joanne Zeis, 43, an Uxbridge woman who works in her husband’s market research firm, has the wrong disease, too – a rare condition called Behcet’s syndrome, a chronic inflammatory disease that affects her blood vessels.

“It’s very frustrating” having something nobody’s heard of, she says, adding that many people simply don’t believe she’s sick. “Eventually, you learn not to talk about it. All that happens is you look like you’re trying to get attention.”

It’s hard enough getting any bad news from the doctor. But it’s even tougher if the doctor can’t figure out what’s wrong.

In fact, for many rare diseases, the first big hurdle is getting a diagnosis. “Most doctors are geared toward sore throats, blood pressure, and arthritis,” says Abbey Meyers, president of the National Organization for Rare Disorders (NORD), a nonprofit group that compiles information on 1,100 diseases.

“People go from doctor to doctor,” she says. Often, there’s no simple test.

For a third of people with rare diseases, in fact, it takes one to five years to get a diagnosis, says Stephen Groft, director of the rare diseases office at the National Institutes of Health. For 15 percent, it takes more than five years.

That uncertainty is so stressful, says Meyers, that people often feel relieved when they finally get a diagnosis – even if their disease is fatal.

“To at least know what you have is helpful,” agrees Linda DeBenedictis, founder of the New England Patients’ Rights Group. People feel anxious when they can’t put a label on symptoms, she says. It becomes “a psychological issue.”

After diagnosis, the next challenge is trying to learn more about a disease that most people, including most doctors, know nothing about. Some patients are simply handed a photocopy of a paragraph from a medical textbook, says Meyers. Increasingly, however, many are finding the information they need from a growing number of sources, including NORD (www.rarediseases.org), on the Internet.

That may be empowering, but the other side of the coin is that for many rare diseases, “there’s no treatment,” says Meyers. For some, there are clinical trials of experimental drugs, but finding them is tough, though the government’s website (http://rarediseases.info.nih.gov/ord) can help.

Even if you do find a clinical trial, the logistics of participating can be daunting. “If you’re lucky enough to get into a clinical trial, you can bet there’s none near your house,” says Meyers. “Most people with rare diseases cannot even find a doctor nearby to take care of them, so they have to travel long distances just to see a specialist.”

Some private pilots fly patients long distances for experimental treatments, but so far, most “major airlines are not stepping up to the plate,” she says.

Then there’s the medication issue. Even when drugs exist for a rare condition, they can be expensive and may not be included in the lists that health insurers use to decide which drugs to pay for.

Thanks to the Orphan Drug Act of 1983, drug companies have an incentive to develop drugs for diseases that affect 200,000 people or fewer. They get seven years of exclusive marketing rights for an “orphan” drug, starting from the date the drug is approved by the government.

But because so few people will ever buy an orphan drug, companies often charge a lot. Genzyme, for instance, makes a drug called Ceredase and a newer one called Cerezyme for Gaucher’s disease, a rare congenital disorder of lipid metabolism. But only 2,500 patients worldwide take these drugs, which cost $150,000 to $170,000 a year.

Rare diseases get short shrift on research funding, too, advocates say, though proving that is tough because the government does not track spending on many rare diseases.

(Funding isn’t exactly even-handed for common diseases, either, in part because patients with more political clout steer research dollars toward their diseases. Lung cancer, for instance gets $800 in research dollars per patient death, compared with $7,500 for breast cancer and $30,000 for HIV and AIDS, some data suggest.)

But for many people with rare diseases, perhaps the toughest problem is the isolation.

“People don’t know of anyone else who’s ever had it,” says Ed Madara, director of the New Jersey-based American Self-Help Clearinghouse. Since 1986, he says, the number of diseases with self-help groups has swelled from 332 to more than 700, a sign that doctors are increasingly able to identify rare diseases and that patients with them are getting more active.

Still, many people find that if they want support for coping with a rare disease, they have to drum it up themselves.

When Ben Cantor89, a retired photographer in Belmont, was diagnosed with ataxia, a coordination disorder that impairs walking, balance, and speech, he wanted a support group. There was none, so he formed his own with a fellow patient. It’s been “fantastic,” he says. “We act like a family – everybody can speak. Everything is confidential.”

Cynthia Wisniewski, 44, of Wayland, whose 6 1/2-year-old son was diagnosed with a form of ataxia called ataxia telangiectasia when he was a year old, can echo that.

“At the time we were diagnosed, there was not much on the Internet,” she says. So she and her husband banded together with three other families with kids with the disease. Those ties have been “extremely therapeutic for us,” she says.

Geri Malter, the sarcoma patient, puts it this way: What people with rare diseases really need is “attention and emotional support,” she says. “It’s just plain lonely to have a disease that nobody talks about.”

Clues but no answers on schizophrenia

June 21, 1999 by Judy Foreman

As a high school kid, Moe Armstrong had lots going for him. ”We were poor people,” he says, but he was captain of the football team in Bushnell, Ill., and with his high hopes for a military career, was clearly his parents’ ”dream.”

While serving in Vietnam, however, Armstrong, now 55 and living in Cambridge, says he ”cracked up.” He heard ”rustling and whistling sounds,” then voices. He had visual hallucinations, too, but thought he was just ”nervous because of the war.”

In fact, what he suffered was a pyschotic break, a loss of contact with reality – a sign of schizophrenia.

Actually a spectrum of brain diseases, schizophrenia afflicts more than 2 million Americans and is a terrifying illness. Not only are patients subject to repeated psychotic episodes including hallucinations and delusions, many also suffer a near-total deadening of emotions, a hallmark of the disease.

The disease is not curable, but it is treatable especially with newer drugs with more tolerable side effects than older ones. And with lots of emotional support from families and strict adherence to medications, some people – perhaps one in five – recover enough to live on their own and even hold down jobs.

But the more scientists look for environmental triggers, probe for suspect genes and peek into patients’ brains with scanning devices, the more they understand why schizophrenia is such a difficult disease to treat – and to live with.

”It’s terrifying,” says Dr. Daniel B. Fisher, a Lawrence psychiatrist who heads the National Empowerment Center, an advocacy group. Fisher was diagnosed with schizophrenia 30 years ago, but says he is healthy now.

But his psychoses – and hospitalizations – were horrific. ”I was convinced the TV was talking to me and me alone,” he recalls.

A neurochemist before he became a doctor, he believed he was the enzyme he was studying. At times, he became totally catatonic – withdrawn from others and unable to move or talk.

No one knows precisely what causes such bizarre thoughts – and such extreme dampening of emotion – but there are clues.

Brain studies, both of living patients and of those who have died, show abnormal circuits in two regions that govern emotions – the cingulate cortex and the hippocampus, says Dr. Francine Benes, director of the lab of structural neuroscience and the brain bank at McLean Hospital in Belmont.

The cingulate cortex is, literally, the center for gut feeling – for conscious processing of data from visceral organs such as the heart, the lungs, the stomach. Schizophrenics can’t process these emotions, which leaves them feeling like robots. ”That’s the most insidious part of this disease, the loss of the sense of self,” says Benes.

The brains of schizophrenics show enlargement of cavities called ventricles, too; some also show atrophy in other regions and decreased metabolic activity in others.

Indeed, schizophrenics often lose gray matter, the brain cells needed for thinking, says Ruben Gur, a professor of neuropsychology at the University of Pennsylvania Medical School. Memory can be affected, too.

No one knows why gray matter in the frontal and temporal lobes disappears in schizophrenia, but it may be that nerve cells deeper in the brain fail to migrate to the outer layers. It may also be due to excessive ”pruning.”

In normal adolescence, the brain destroys some neurons, perhaps so that, by destroying some connections, others are strengthened.

In people with schizophrenia – which usually strikes between age 16 and 30, there may be too much pruning, says Dr. Judith Rapoport, chief of child psychiatry at the National Institute of Mental Health.

But it’s not just anatomy that’s different in schizophrenics’ brains, it’s chemistry, too. In healthy people, there’s a balance between neurotransmitters that increase the firing of brain cells and those that dampen these signals.

In schizophrenics, there may be too much of two transmitters, dopamine and glutamate, which may lead to over-excitation of the brain – and hallucinations.

Dopamine acts by inhibiting cells that make a calming neurotransmitter called GABA. If there’s too much dopamine around, GABA shuts down. In addition, without GABA, cells that make glutatmate fire more often, further boosting excitation.

The older anti-psychotic drugs – Thorazine, Prolixin, Haldol, Navane, Stelazine, Trilafon, and Mellaril – work by blocking a type of dopamine receptor on brain cells called D-2. The net effect is to reduce the effect of dopamine, which controls some symptoms.

But blocking this receptor causes unpleasant side effects, including muscle stiffness, spasms, and tardive dyskinesia, in which the tongue protrudes and patients often smack their lips.

The newer ”atypical” drugs – Risperdal, Clozaril, Zyprexa, and Serlect – act on different receptors and seem to trigger fewer side effects. (Clozaril, however, brings its own problems, notably destruction of white blood cells, which can lead to serious infections and even death; for this reason, people taking Clozaril have to have blood tests every week or two.)

Scientists are working on new drugs in hopes of further reducing the side effects that often prompt patients to stop taking their medications.

Researchers are also trying to identify environmental factors that may trigger schizophrenia in susceptible people.

The notion that bad mothering or ”schizophrenogenic” families cause the disease has been completely rejected. Researchers now think that problems during pregnancy and childbirth, such as viral infections, prolonged labor, fetal distress, and other obstetrical complications, may be involved.

Spotting warning signs of schizophrenia is tricky, though researchers have been able to distinguish kids who later got the disease by looking at home movies taken when the children were two years old. The kids at risk were clumsier, had odd head movements, lacked emotional warmth, and seemed very shy, according to the June 1999 Harvard Mental Health Letter.

Other studies suggest that kids at risk for schizophrenia are slow to acquire motor skills, learn language, and pay attention, but these deficits are often subtle, until adolescence.

By adolesence, the signs are clearer: schizophrenics are often isolated and show ”flat affect,” or deadened emotions.

If a child shows these symptoms and there is a family history of schizophrenia and obstetrical problems, it makes sense to consult a child psycyhiatrist, says Benes of McLean.

It would also help, says psychiatrist Fisher, if people without schizophrenia were kinder to and less fearful of those who have the disease. Though lay people often assume schizophrenics are violent, they are no more prone to violence than the general population.

Families need support, too, says Mary Rappaport, whose brother has the disease.

”I lost a sister to brain cancer. As hard as that was, it’s a more painful loss in many ways to lose a loved one to one of these severe mental disorders because they are still here, but they are not the same people they used to be,” says Rappaport, spokeswoman for the National Alliance for the Mentally Ill.

And recovery can happen – and did for Moe Armstrong.

Despite hospitalizations in Vietnam and California, Armstrong said he didn’t understand he had schizophrenia, though he knew he was ”too mentally ill to live in civilization. So I went and became a bush Vet.” He lived in the mountains of New Mexico, guzzling booze, cheap food, and whatever drugs he could get his hands on.

Eventually, he weaned himself from most drugs and earned two master’s degrees. He still hears voices, but has learned that when they start, if he lies down in a quiet room, they become less insistent. He is also taking an experimental medication.

And, through his work with a mental health services organization called Vinfen, he has a mission: ”To teach other people and learn from other people how to live with major mental illness.”

A visit most men would rather not make

June 14, 1999 by Judy Foreman

Melvin Small, a 36-year-old Dorchester man who works as a parking lot cashier, has your basic guy-thing about going to the doctor.

“I’m not really into doctors and stuff like that,” he says. When he finally does go, he asks no questions because he doesn’t want to hear anything bad. “I let him tell me,” he says.

His wife, on the other hand, “goes a lot and asks lots of questions,” he adds, laughing. “If her finger hurts, she sees a doctor. She wants to know what’s going on.”

The conventional wisdom is that men, poor hapless souls, just don’t take care of themselves. And there’s some truth to that.

They’re less likely than women to see a doctor when they have chest pain, according to a survey being released today by CNN and Men’s Health magazine. In fact, one-third of men say they wouldn’t see a doctor right away even if chest pain was severe.

They’re also less likely than women to see a doctor promptly if they have shortness of breath, another sign of potential heart trouble, the survey shows.

In fact, men are less likely to go to the doctor, period, according to the National Center for Health Statistics, which says women make 471 million office visits a year to men’s 316 million. That’s 3.5 visits per year per women and 2.4 for men.

But the question is, does it matter? Are women really better off for all that contact with the medical system? Are men truly worse off for their avoidance of doctors?

Women do live longer than men – by an average of 5.6 years. But is that because they see doctors more often? Or is it female hormones, which until menopause, protect women against heart disease, the leading killer of both men and women? Or is it something else?

If men were truly neglecting their health, you’d predict a number of things; for example, they’d be expected to have cancer that is more advanced at diagnosis, at least for tumors for which there are early-detection tests.

Last week, we asked National Cancer Institute biostatistician Brenda Edwards, to check out the hypothesis that men are diagnosed at later stages of some cancers that affect both sexes, including tumors of the lung, colon-rectum, bladder, kidney, pancreas, skin (melanoma), stomach, oral cavity, and pharynx.

What she found was surprising: there’s little difference between men and women when it comes to what stage they’re diagnosed with cancer. Men do get more cancer overall, she says, and partly because of that, are more likely to die of it. But men also smoke more, and they may also be out in sun more at work or play and may encounter more carcinogens on the job.

Okay, but what about heart disease? Surely all those pot-bellied, heavy-smoking, out-of-shape guys must have more advanced heart disease than their conscientious wives by the time they finally see a doctor.

Nope. It’s women whose heart disease is typically diagnosed at a later stage, says the federal Centers for Disease Control and Prevention in Atlanta. Because they’re diagnosed later, women are more likely to die after a heart attack or a procedure called angioplasty to open clogged coronary arteries.

Part of that is that doctors often miss women’s symptoms, which can be different from the classic “male” symptoms.

 While men having a heart attack often feel as if there’s an elephant on their chests or have pain radiating down their arms, women often feel pain in the upper abdomen and have nausea, sweating, and shortness of breath, says Dr. Marianne Legato, professor of clinical medicine at Columbia University College of Physicians and Surgeons and a pioneer in the new field of gender-specific medicine.

So does all this mean men are right to eschew doctors?

Not at all. In fact, whether or not men could live as long as women if they took better care of their health, they might feel better, physically and emotionally, if they shed their resistance to seeking help.

At New England Medical Center in Boston, Dr. Sheldon Greenfield and psychologist Sherrie Kaplan, director and co-director, respectively, of the Primary Care Outcome Research Institute, have studied audio tapes of how men and women behave at the doctor’s office. The differences are striking.

Overall, the average man asks few or no questions in a 15-minute visit, whether the doctor is male or female. The average woman asks six or more.

It’s worst when men see male doctors, says Kaplan. It’s a “businesslike, gruff, clipped encounter. . .Men don’t complain. We women say, ‘Wait a minute, you interrupted me.’ ” When men see female doctors, they do a bit better – they tend to ask a couple of questions.

Women probably learn to be assertive with doctors because they have more practice. They’re told to see gynecologists regularly from adolescence on and they take their kids to the doctor and hammer away until they get the answers they need.

That assertiveness pays off. In Kaplan’s studies of people with diabetes, hypertension, or arthritis, patients who ask more questions and get more information fare better medically.

Being more willing to talk to a doctor can help in other ways, too. “In terms of quality of life, men are often worse off than women,” says Dr. Martin Miner, an internist at Harvard Pilgrim Health Care of New England in Swansea, who is studying reasons why men don’t go to doctors.

“Men have all sorts of intimacy issues,” he says, yet don’t know how to talk about feeling bereft when children grow up, or feeling dissatisfied at work or not being close to their wives.

That clamming up doesn’t help. While women are more than twice as likely to suffer from major depression, statistics show that men’s emotional pain often shows up in hidden or not-so-hidden depression, substance abuse, and suicide. Indeed, men are about four times as likely as women to commit suicide.

Over the course of a lifetime, equal numbers of men and women – roughly half in each group – have some kind of psychiatric disorder: depression, anxiety, or substance abuse, says Ron Kessler, a sociologist at Harvard Medical School. Yet a 1991 Rand study showed doctors miss 67 percent of depression in men because they’re looking for “feminized” symptoms such as crying, not the irritability and anger that men often exhibit.

The bottom line is that many men are hurting – physically and mentally – yet they don’t seek help. “Men feel less virile and strong if there’s something wrong with their bodies. It’s so sad. They don’t give themselves permission to even explore their concerns,” says Miner.

Cancer treatment needs emotional rescue

June 7, 1999 by Judy Foreman

Last week, Harvard researchers reported in the New England Journal of Medicine that 28 percent of newly-diagnosed breast cancer patients turn to complementary therapies such as massage, herbs, relaxation techniques, and self-help groups – even though they had never used so-called alternative medicine before.

In fact, the women most likely to turn to such therapies, the researchers found, were the ones who suffered the most anxiety and depression in the first three months after diagnosis.The fact that so many patients feel they need to take their distress outside of the doctor’s office is a powerful statement, not only of how common these feelings are, but of how little faith patients seem to have that their doctors can help with the emotional side of illness.

It’s basically “don’t ask, don’t tell” in many oncology clinics, wrote Dr. Jimmie Holland, chair of the psychiatry and behavioral sciences department at Memorial Sloan-Kettering Cancer Center, in an editorial accompanying the new research.

It’s natural, of course, to feel upset and worried when faced with a cancer diagnosis. But studies show that at least a third of cancer patients go on to develop serious anxiety and depression. Even so, “under 10 percent, more like 5 percent, get any kind of counseling,” Holland added in a telephone inteview.

Doctors don’t ask about a patient’s emotional state because they’re often busy and patients don’t tell because “they don’t want to sound like wimps or like they’re not coping well.”

That’s a shame because evidence shows that when people with cancer get the emotional support they need, they do better – perhaps not in terms of survival, but at least in wellbeing.

“The vast majority of studies, probably 15 to 20, show that group interventions improve quality of life,” says Dr. David Spiegel, a Stanford University psychiatrist. He adds that a still-unpublished study done at his center and 10 others across the country shows that such interventions can yield a 40 percent reduction in mood problems among breast cancer patients.

Psychologist Ann Webster, director of the mind-body cancer program at the behavioral medicine clinic at Beth Israel Deaconess Medical Center in Boston, supports that idea.

Patients with many types of cancer attend her 10-week group sessions and they show “statistically significant reductions in anxiety and depression,” she says. In fact, her data suggest the improvements last years after the group sessions, which provide not just a chance to talk about feelings but specific coping methods like taking up yoga or eating a more nutritious diet.

Support groups can also help family members of cancer patients, in part by offering a chance to talk about “the fear of a loved one dying and not wanting to bring that up because they don’t want to put a black cloud [ on the patient] ,” says Phyllis Truesdell, a clinical social worker at the Wellness Community in Newton, which offers free support groups for cancer patients and separate groups for caregivers.

For patients themselves, she adds, groups are a place to “be honest about what you’re experiencing, the fear of dying, fear of pain, fear of leaving family and friends and not wanting to do that, not being ready.”

Joining a group with other cancer patients obviously does mean that you’ll encounter other people, some very sick, which can be frightening. But even when other people in a group die, things aren’t all bleak, says Truesdell.

Two weeks ago, one man in her family-members group reported that his wife was free of cancer. “Everybody could cheer, yet at the same time, there was a fellow whose wife had died. It’s all okay. It all gets spoken about, and cried about. That happens often, in every group – there’s laughter and tears.”

Carol Solomon, a 51-year old Framingham recreation therapist with ovarian cancer who has been in a Wellness Community group for about a year, can vouch for that.

“We had four deaths in our group,” she says. “It was devastating. It was like losing a family member. But to have known that person and learned from their strengths is very helpful.”

Fran Doocey, a 42-year old library assistant from Roslindale who also has ovarian cancer and is in that group, agrees, noting that the different outcomes in and of themselves offer perspective. “People in the group have died. But some people have left because they’re fine.”

“Whether your feelings are up or down, they understand. They never get tired of listening,” says Diane Rund, 48, a school secretary in Ashland who has breast cancer and is in the group, too.

What everyone would really like, of course, is solid evidence that this kind of emotional support doesn’t just make people feel better but helps prolong life, too.

A decade ago, psychiatrist Spiegel seemed to prove this when he published data on advanced breast cancer patients who attended a support group. They lived for 36 months, twice as long as those who did not attend such a group. Similarly, in 1993, Dr. Fawzy I. Fawzy, a UCLA psychiatrist, found that people with malignant melanoma who participated in a group lived longer than those who didn’t.

The hypothesis is appealing – that emotional support can reduce stress and improve immune function and perhaps thereby, combat cancer.

But so far, except for these tantalizing tidbits, no one has has been able to link behavioral interventions with changes in immune function that truly alter health outcomes, says Ronald Glaser, an immunologist at Ohio State University. Indeed, a number of researchers have tried to replicate the findings that emotional support prolongs life – and failed.

Even so, Glaser says, it makes sense for people with cancer to try support groups and other behavioral interventions “because (A), a patient feels better, (B) it could have a biolocical effect and (C), you don’t lose your hair – it’s not toxic.”

Not everyone, of course, benefits from or even wants to talk about cancer with other people. Indeed, patients tend to “select their therapies” according to what suits them, says Barrie R. Cassileth, a psychologist and medical sociologist who heads the integrative medicine department at Sloan-Kettering in New York.

But for many patients, she adds, a key ingredient of complementary therapy may simply be enhancing a patient’s sense of control.

The bottom line, says Hester Hill, chief oncology social worker at Beth Israel Deaconess Medical Center in Boston, is that for anyone with cancer, “clearly, the first goal is to save someone’s life. But almost equal attention needs to be paid to the quality of the life we are saving.”

For more information

For more information on coping with the emotional distress of cancer, you may contact:

  • The Wellness Community in Newton, 617-332-1919 begin_of_the_skype_highlighting              617-332-1919      end_of_the_skype_highlighting or on the web, www.wellnesscommunity.org. Or nationally, 1-888-793-9355 begin_of_the_skype_highlighting              1-888-793-9355      end_of_the_skype_highlighting..

  • The Behavioral Medicine Clinic at Beth Israel Deaconess Medical Center in Boston, 617-632-9530 begin_of_the_skype_highlighting              617-632-9530      end_of_the_skype_highlighting.

  • The American Cancer Society, 1-800-227-2345 begin_of_the_skype_highlighting              1-800-227-2345      end_of_the_skype_highlighting.

  • Zakim’s brave search for what works

  • It would be hard to find anyone who has fought cancer more passionately, or with more open-mindedness about complementary therapies, than Leonard Zakim, 45, the executive director of the New England regional office of the Anti-Defamation League.

  • Zakim was diagnosed in 1995 with multiple myeloma, a type of cancer that originates in the bone marrow. He’s been through a grueling bone marrow transplant and fought his way back from life-threatening relapses several times since.

  • He uses acupuncture for what he describes as “incredible pain.” He exercises when and as much as he can. He does massage and meditation. He keeps setting new goals – like going to Dublin last month for a Bruce Springsteen concert despite a recent round of debilitating treatments and a series of infections all spring.

  • As co-chair of the Complementary Therapies Task Force at the Dana-Farber Cancer Institute, he’s become a vigorous advocate for cancer patients using everything from support groups to acupuncture and herbs in addition to standard treatments.

  • He’s also become a believer in the power of psychological therapy – individual counseling and support groups – to offset the despair that might otherwise be crippling.

  • One-on-one therapy helps, he says, because “you have no responsibility to that person. You don’t have to be strong. You don’t have to be afraid to be weak. It’s not like being with a family member who is so tied to your getting well and surviving that they don’t want to talk about dying and the times you feel, ‘I’m just just so tired of being sick and tired.’ “

  • Support groups, like the one he’s in that consists of other people who’ve been through bone marrow and stem cell transplants, help in a different way.

  • “These are folks who have been through everything you’ve been through. So when you relapse, which I’ve done a number of times, you go to the group. . .and they understand.”

  • Zakim recalls his first relapse. “I was crushed, I was in tears. I went to the meeting. It wasn’t like I felt better, but people said, ‘You know, it’s terrible. But you come out of it.’ “

  • He adds, “Your doctors, with all due respect, are supposed to put you through this. . .but the rest of it is such a struggle.” Cancer treatment and the constant stress of tests, waiting for test results and not knowing how you’ll feel from one day to the next, “this stuff really batters you,” he says.

Instant grief therapy may be no quick fix

May 31, 1999 by Judy Foreman

Boston University psychiatrist and trauma specialist Dr. Bessel van der Kolk likes to tell the story of his trip to Puerto Rico 10 years ago after Hurricane Hugo.

The place was humming. ”Everybody was rebuilding houses. I came into this devastated island scene of human resiliency,” he says. Then the feds swooped in, telling people how to get reimbursed and go about recovery. ”All the rebuilding stopped. People sat in homeless shelters. It interrupted the natural healing process.”

Van der Kolk has no grudge against federal assistance, or any organized mental health intervention in the wake of disasters such as hurricanes, plane crashes or the recent school shootings in Littleton, Colo., and Conyers, Ga.

What he and other skeptics do have, however, is a healthy respect for the capacity of individuals and communities to heal themselves – and a wariness about the value of sending hordes of strangers, albeit professionals, to help.

The notion that people who’ve witnessed a natural or manmade disaster need expert counseling, and fast, runs deep in America. Somehow, we’ve come to assume that without planeloads of specialists to help us get a grip, our fragile psyches would crumble in the face of the tragedies we witness.

Last year, through the Center for Mental Health Services, a federal agency, the US government spent $10 million to help states provide emergency mental health services to people in disaster areas. Private groups, like the International Critical Incident Stress Foundation in Ellicott City, Md., are also on call with ”debriefers” to zoom wherever they might be needed.

But are they needed? Is there evidence that professional intervention helps bystanders get over traumas any better than they would without it? For that matter, isn’t it possible that intervention might make some people worse, perhaps those who need time and quiet rather than venting of feelings to heal?

Psychologist Raymond Flannery, Jr., director of training at the Massachusetts Department of Mental Health, has reviewed the last 30 years’ worth of published data on crisis intervention, about 90 studies. Of these, he says, 13 found no benefit or potential harm, and the rest suggested there is a benefit.

But many of the studies are methodologically flawed. It’s rare, for instance, for researchers to randomly divide people into those who get instant help and those who don’t, partly because counselors usually assume it would be unethical to deprive people in the control group of their services.

Beyond that, there’s no unanimity on what to study: group counselling for all bystanders of a disaster or one-on-one debriefing? And what outcomes should be measured – distress a month after the intervention? Three months later? A year?

Even proponents of a kind of intervention called group debriefing concede that, as trauma specialist Robert Macy of the Trauma Center in Brookline puts it, there are no randomized, controlled trials of the technique, though some are underway.

And while crisis intervention probably does help many people – indeed, the anecdotal evidence is overwhelming – it doesn’t help everybody. Seven years ago, for instance, an El Al plane crashed into an apartment building in Amsterdam, providing researchers a chance to study crisis intervention.

Everyone participated in ”intense communal activity – dancing, singing, funerals, a lot of good holding,” and half got individual debriefing as well, says BU’s van der Kolk. Those who got the debriefing were more likely than those who didn’t to get post-traumatic stress disorder, in which one’s life becomes centered on the trauma for months or years afterwards.

”This may seem surprising,” says van der Kolk, but for some people, ”plunging into your feelings may actually interfere with the natural healing process. Biologically, stirring up the emotions will keep the body in a state of hyperarousal.

”The critical thing after exposure to trauma is to get the body to calm down…Religious ceremonies get it: sit down, hold each other, mourn with each other,” he says. ”But don’t immediately go into all the details of how painful it is.”

George Bonanno, a psychologist at the Catholic University of America in Washington, D.C., agrees. He has studied personal losses – the death of a loved one – not communal disasters. He believes that after a tragedy, ”most people are just trying to figure out what hit them and the last thing they need is a bunch of therapists arriving and telling them what has happened to them and what they need to do.”

But mere venting is not all that crisis intervention specialists actually do. A key goal, in fact, is not just emotional release but restoring a sense of community, control and safety – usually in groups, not individual sessions, though group sessions do provide the debriefers with a chance to screen people and refer those who may need more help.

”A lot of good counseling isn’t just catharsis, it’s to see what resources they have to get back to normal,” says Peter Sheras, a clinical psychologist at the University of Virginia.

People often think ”there’s something wrong with them, that they’re losing their mind,” after a disaster, says Elizabeth Carll, a Centerport, N.Y. trauma psychologist. What crisis experts do is ”reduce the impact of the crisis” by teaching people it’s normal to be stressed after an abnormal event.

Historically, the rationale for quick intervention goes back to World War II and army efforts to get combat-fatigued soldiers to feel better – and get back to the trenches. Over the years, that led to programs for firefighters and police officers.

Fifteen years ago, Maryland psychologist Jeffrey Mitchell developed what he calls critical incident stress debriefing – and later, critical incident stress management, which includes more services, including family and individual counseling.

The basic debriefing is a 7-step, 2-hour group session, usually within 10 days of the disaster, says psychologist George S. Everly, chairman of the board emeritus at the critical incident foundation in Maryland. The debriefer first asks people to recount the facts – what they saw or heard, then asks about thoughts and emotions, then about physical symptoms like insomnia and rapid heart beat.

Then comes the key, he says – ”expectancy,” the lesson that it’s normal to have intense reactions to an abnormal event.

Indeed, a 1986 study of combat-stressed Israeli soldiers during the Lebanon war showed that those who fared best were the ones who got intervention close to the front, close in time to the trauma, and who were taught that stress reactions are normal.

That basic strategy certainly helped a Boston man in his 40’s. A little over a year ago, a former employee walked into the office where this man, who wants to remain anonymous, works. The intruder assaulted one person and terrified co-workers. Three days later, Boston trauma specialist Macy ran a debriefing for those most affected.

”It definitely helped,” the man says, not just in making people feel better in the moment, but in spurring co-workers to institute a better security system.

That kind of pulling together is probably the best therapy of all, says van der Kolk. ”Trauma makes people feel helpless, so if you can do something where you feel you’ve changed the world a little so it won’t happen again, that is very helpful.”

Some just say yes to novel detox program

May 24, 1999 by Judy Foreman

For Monica Cianci, a 38-year-old housewife in Cranston, R.I., hell began five years ago — and getting cancer was just the beginning.

Before her cancer surgery, she’d had “no trouble with drugs.” But afterward, she wound up addicted to prescription painkillers, opiate drugs like Vicodin and Percocet.

To combat that, doctors switched her to the painkiller methadone, a legal cousin of heroin from which addicts can be weaned slowly. But she got addicted to methadone, “a worse habit than I started with.” She tried to quit, but couldn’t: “I was crawling on the floor. . . . I was pouring sweat.”

Finally, she found the Nutmeg Intensive Rehabilitation Center in Tolland, Conn., which, like a growing number of medical centers and hospitals, offers opiate addicts a new — yet expensive and not well researched — way to get off drugs.

It’s called “rapid detox” and the idea is straightforward: Give patients general anesthesia plus a drug to induce withdrawal and other medications to combat withdrawal symptoms. The patient sleeps through the worst of it — pain, racing heart, cramps — and wakes up 6 hours later, “clean” and ready to try staying that way.

Treatment of opiate dependency is a dismal business — and an urgent one, mainly because of the growing popularity of a potent new form of heroin that doesn’t have to be injected; it’s sniffed.

The government believes 810,000 Americans are now addicted to heroin, but “the real number is undoubtedly higher,” says Dr. David R. Gastfriend, a psychiatrist who heads Massachusetts General Hospital’s addiction services.

Heroin is “the new party drug, and the reason is you can sniff it,” he says. In the early 1990s, the main consumers were the “fast-living crowd, the glamour media folks . . . people in the stock trading world who were looking for instant turn-ons.” Now, it’s in suburbia, inside public and private schools. “You don’t have to go into tough neighborhoods to get it anymore.”

Getting off heroin is, of course, harder than getting started, though there are many ways to try, says Dr. Herbert Kleber, a psychiatrist who heads the substance abuse divisions at Columbia University College of Physicians and Surgeons and the New York State Psychiatric Institute.

One approach, for instance, is to switch heroin addicts to methadone, then wean them off that. Another is to use medications like naloxone, which is injected to induce rapid withdrawal, and naltrexone, which is taken by mouth to block heroin and help addicts stay clean. Behavioral therapy, residential communities, and groups like Narcotics Anonymous can also help.

But it’s extremely tough going. At one year post-treatment, the relapse rate is about 75 percent. And many addicts never get past the first hurdle — the detoxification process itself.

Opiate drugs act by binding to mu receptors in the brain; with chronic use, the brain changes to adapt to the presence of opiates, says Dr. David Simon, an anesthesiologist who heads the Nutmeg center.

Then, if opiates are stopped, biochemical chaos ensues. In particular, part of the brain called the locus ceruleus goes into overdrive, pumping out the stress hormone noradrenalin. This triggers the pain, muscle spasms, and diarrhea that give withdrawal its nicknames — “cold turkey” for the goosebumps caused by muscle spasms around hair follicles, “kicking the habit” for involuntary leg movements.

One way to pry opiates off mu receptors is with naltrexone or naloxone, narcotic “antagonist” drugs that have 140 times more “affinity” for mu receptors than heroin, which means they push heroin off these receptors and keep it off.

But the abrupt withdrawal they trigger is virtually intolerable. To remedy that, in the late 1970s, Kleber and others began using a blood pressure drug, clonidine (Catapres) to ease these symptoms by blocking noradrenalin. Since then, Yale University researchers have shown they can detoxify two-thirds of addicts in a few days by using clonidine plus naltrexone.

For addicts terrified of withdrawal, however, that’s still not fast enough — hence the appeal of anesthesia-assisted detoxification.

In 1996, Bennett Oppenheim, a psychologist in Fort Lee, N.J., imported a rapid detox progam developed overseas by the Center for Investigation and Treatment of Addiction Inc., whose parent company is now in Beverly Hills, Calif.

So far, he has supervised the process in 700 patients, including some at Pascack Valley Hospital in Westwood, N.J. He estimates that six months after rapid detox, for which he charges $6,800, 55 percent of addicts are still clean.

One of the specialists he recruited is Dr. Clifford Gevirtz, an anesthesiologist at Metropolitan Hospital Center in New York. Initially skeptical, Gevirtz, who has “detoxed” 184 patients and charges $4,500 for it, says he is now “a true believer” in rapid detox: “It’s the compassionate approach.”

Dr. David Simon of Nutmeg, who charges $3,400, claims a higher success rate among the 350 patients he has detoxed so far. Based on the first 162, he says, 75 percent are clean, though that’s at three months after detox.

Simon’s patients are treated in a free-standing center, not a hospital, and they do not stay overnight, though many stay nearby. That rankles Oppenheim: “While this is a relatively safe procedure, it requires ICU-level monitoring and an overnight hospital stay.”

Indeed, even in good hands, complications can arise.

Kleber knows of at least four deaths — two in New Jersey and two in Great Britain — though it’s impossible to calculate a mortality rate because no one knows how many people have had the procedure. Still, he says, “the body is stressed sufficiently that you may get cardiac arrhythmias” during or for several days afterward.

And sometimes — as at St. Elizabeth’s Medical Center in Boston — the cause of death is never known. Dr. Carl Gold, a St. Elizabeth’s anesthesiologist, has rapidly detoxed 40 patients, one of whom died three days later. The family refused an autopsy, so the cause of death is unclear.

Gold works with the Uniqual Network, a Framingham company that helps medical centers set up detox programs. He says 25 to 30 percent of his patients are clean a year later. Rapid detox “is not the magic bullet,” he says, but it can get patients clean, so they can try to stay that way.

In most cases, insurers don’t pay for rapid detox. But it’s such a lucrative procedure that entrepreneurs now offering it are fighting over patients and, in the case of Nutmeg and Uniqual, legally sparring with each other.

But it’s the unanswered scientific questions that are the most troubling. An unofficial review of rapid detox in 1996 by the National Institute on Drug Abuse concluded it has not been shown to be any better than other treatments in reducing relapse.

Until there are data from a controlled trial — which Kleber hopes to begin soon — rapid detox “should not be a clinical procedure,” he says. “It should be a research procedure.”

At Mass General, Gastfriend, who has used rapid detox for seven patients, worries about the potential for exploitation because “patients are so desperate.”

But at least some of those who’ve been detoxed at Nutmeg, MGH or Pascack Valley Hospital are glad they took the chance.

“Joseph,” a 39-year-old New Yorker who had a $300-a-day habit, went through rapid detox with Oppenheim. Several days later, he said he felt tired but was optimistic he could stay well. A 49-year-old Rhode Island man who had rapid detox at MGH, said the process made him feel he was “dying — I was very, very sick.”

Even so, he says, rapid detox “was the best thing I ever did” because trying to kick his habit gradually simply didn’t work. As for Monica Cianci, her gratitude toward Nutmeg knows no bounds. The staff was “absolutely wonderful,” she says. “I am absolutely clean now. I will stay clean for rest of life. . . I know I am going to be a success story.”

SIDEBAR:

New medications may reduce opiate cravings

While rapid detox has drawn the most headlines, scientists are working on other ways to help addicts get and stay clean.

Among the most exciting is a pair of related drugs that dissolve under the tongue, expected to be called Subutex and Suboxone, under joint development by the National Institute on Drug Abuse and Reckitt & Colman Pharmaceuticals, Inc. of Richmond, Va.

A close cousin of these drugs, Buprenex, is already on the market for pain control, but must be taken by injection. All three drugs contain a chemical called buprenorphine.

The new medications, expected to be reviewed later this year by the US Food and Drug Administration, will be “very significant” additions to the drugs now used to treat opiate dependency, chiefly methadone and another drug known as LAAM, says Alan I. Leshner, a psychologist who heads the drug abuse institute.

Methadone is a synthetic opiate that blocks heroin’s effects for 24 hours. It is provided to addicts only in clinics and can be used, in decreasing doses, to wean them from heroin. LAAM (l-alpha acetylmethadol) is another synthetic opiate that blocks the effects of heroin, for up to 72 hours.

In addition, naloxone, a drug given intravenously, and naltrexone, a pill, can be taken to block the effects of heroin.

NIDA has funded studies that show the two new drugs are safe and effective. Like heroin and methadone, buprenorphine latches onto mu receptors in the brain. But while heroin and methadone are full “agonists,” which means the more one takes, the bigger the effect, buprenorphine is a partial agonist, which means it has a ceiling — after a certain dose taking more has no effect.

In addition, Suboxone has an extra feature. To prevent abuse, it is hitched to naloxone, which would trigger unpleasant withdrawal symptoms if an addict were to grind it up and inject it. (Naloxone can’t be absorbed under the tongue, so it would probably not trigger withdrawal symptoms if taken as directed.)

Ultimately, Suboxone may even be dispensed by prescription for at-home use, which would be easier for recovering addicts than having to go to a methadone clinic every day.

Drugs could eradicate a fatal cancer

May 17, 1999 by Judy Foreman

For years now, the incidence of some types of lymphoma – the cancer that killed former US Sen. Paul Tsongas, Jackie Onassis and Jordan’s King Hussein – has been among the fastest rising of all cancers, and no one is quite sure why.

The death rate has been increasing, too. This year, 64,000 Americans will get lymphoma and 27,000 will die from it.Yet lymphoma, which springs up in the core of the immune system – in B and T cells in the blood, lymph nodes, and lymph vessels – may be the cancer with the brightest hopes for treatment, and even cure.

There’s good reason for this. In solid tumors such as breast cancer, cancer cells are packed together with normal cells; in the liquid cancers – leukemia and lymphoma – some cancerous cells float freely in the blood.

This makes them “easier to capture,” says Dr. David Rosenthal, head of the Harvard University Health Services and immediate past president of the American Cancer Society.

Over the years, the ability to study these cells has yielded a detailed knowledge of markers on the cell surface, against which promising new drugs called monoclonal antibodies are being targeted.

Lymphoma comes in two basic types – Hodgkin’s disease, which has four subtypes, and non-Hodgkin’s, which has 30 subtypes “and more as we get smarter,” says Dr. Morton Coleman, director of the center for lymphoma and myeloma at New York Presbyterian Hospital-Cornell Medical Center.

Chemotherapy and radiation work well for Hodgkin’s, which unlike non-Hodgkin’s, has been declining in incidence. Ten years after diagnosis, 77 percent of Hodgkin’s patients are alive, according to the American Cancer Society.

With the most common form of the aggressive non-Hodgkin’s lymphoma, chemotherapy can cure about 50 percent of patients. Of those who aren’t cured initially, 50 percent can be cured with high dose chemotherapy and bone marrow transplants.

“These data are really quite convincing,” says Dr. Lawrence Shulman, vice-chairman for clinical services for adult oncology at the Dana-Farber Cancer Institute.

Paradoxically, it’s the less aggressive forms of non-Hodgkin’s lymphoma that have been incurable. However, some of these do respond to monoclonal antibodies and to relatively new chemotherapy drugs like Fludara, Leustatin and Nipent.

The work that led to the development of monoclonal antibodies against lymphoma began years ago, when researchers discovered that all B cells carry a marker called CD20 on their surface, notes Dr. Andrew Zelenetz, chief of the lymphoma service at Memorial Sloan-Kettering Cancer Center in New York.

A year and a half ago, Rituxan, made by Genentech, Inc. and IDEC Pharmaceuticals, was approved by the Food and Drug Administration for a cancer called follicular lymphoma.

Rituxan works by finding and destroying all cells, normal and malignant, that carry the CD20 marker. Afterwards, stem cells in the bone marrow create a new crop of B cells. In some patients, the new crop is cancer-free. In others, it contains both healthy and malignant cells. But because Rituxan has few side effects, treatment can be repeated.

Rituxan has now been used in 15,000 patients, many of whom had relapsed after other therapy. So far, half have responded favorably, and six percent of those get a complete remission, meaning that cancer is undetectable. The benefits last about a year.

Just behind Rituxan in the pipeline is Bexxar, made by the Coulter Pharmaceutical Co. and expected to be approved later this year. It’s like Rituxan, but has a radioactive compound (I-131) attached. In trials with patients who have relapsed after other treatment, it produces a favorable response in 70 percent; of those, 30 percent had a complete remission for three years.

In patients who have not had prior treatment, Bexxar seems to produce a whopping 100 percent response rate – with 70 percent in complete remission. But Dr. Bruce Cheson, head of the medicine section in the division of cancer treatment and diagnosis at the National Cancer Institute, is cautious: “Patients relapse – no one is cured.”

Because it makes a patient’s body radioactive for a few days, Bexxar will probably have to be given in a hospital in some states, says Dr. James Levine, a lymphoma specialist at Beth Israel Deaconess.

But other states, including Massachusetts, have recently redrafted their regulations to comply with new requirements of the federal Nuclear Regulatory Commission. The NRC has concluded that at the doses suggested, such drugs drugs do not present a danger to people in close proximity to patients and therefore can be given on an outpatient basis.

Also in the pipeline is another radioactive monoclonal antibody called Y2B8, which contains yttirum and has some of the advantages of both Rituxan and Bexxar. The manufacturer, IDEC, says it will probably seek FDA approval in mid-2000.

Yet another drug, Oncolym, is aimed at a different cellular marker, HLAdr. It’s being developed by Techniclone Corp. and will be marketed by Schering AG of Germany; it could be on the market within a year and a half. Still another, LymphoCide, by Immunomedics Inc., is aimed at a different marker, CD22.

Beyond the new antibodies, scientists are trying to find other ways to treat lymphoma, including so-called antisense RNA compounds to block a gene called Bcl2 that often goes awry in lymphoma, customized vaccines to prevent relapse, and new variations on bone marrow transplants.

The bottom line is that lymphoma “is the area where there has been the most progress” in basic science, much of which is already being translated to new therapies says Dr. Jerome Groopman, chief of experimental medicine at Beth Israel Deaconess Medical Center.

Indeed, there are “more exciting treatments currently being explored for patients with lymphoma than probably for any other tumor,” says Cheson of NCI.

“Given the rapid pace of development,” adds Coleman of New York, “I fully anticipate that the overwhelming majority of patients will be cured within the next decade.”

Concern over rare tumor

A year and a half ago, Zenar Ambrozik thought he’d had a stroke – he became incontinent and began stumbling badly.

Ambrozik, now 81, was rushed from his Wakefield home to Melrose-Wakefield Hospital, where he had a brain scan. “They said, ‘Oh, boy. There’s something in your brain,’ ” he says.

There certainly was. At Massachusetts General Hospital, where he was later seen, doctors found a kind of brain tumor that is rare – it strikes 3,000 Americans a year – but it is increasing so fast some experts fear it could become the most common brain tumor.

It’s called brain lymphoma, or primary central nervous system lymphoma, and it’s a strange cancer indeed. It also appears highly sensitive to a therapy pioneered at MGH.

Between 1973 and 1991, brain lymphoma increased 10-fold nationwide; researchers initially thought it might be linked to better diagnosis or perhaps to AIDS.

But neither of those would completely explain the increase, says Dr. Tracy Batchelor, director of neuro-oncology at MGH.

Brain lymphoma appears to be a subtype of non-Hodgkin’s lymphoma, a systemic cancer that affects B cells of the immune system. But brain lymphoma is confined to the nervous system and the tumors are “biologically very distinct,” says Dr. Michael Grossbard, an MGH lymphoma specialist. They “don’t get out into the rest of the body.”

In other words, people with brain lymphomas don’t usually have systemic lymphoma, even though the latter can spread to the brain. “Even when systemic lymphomas do spread to the brain, they look very different from primary brain lymphomas,” says Dr. John W. Henson, executive director of the MGH brain tumor center.

Nobody knows where brain lymphomas arise, but it’s probably some “cryptic location elsewhere,” says Dr. Fred Hochberg, an MGH neuro-oncologist. What is clear is that brain lymphomas are highly lethal. “This kills people within four months if it’s not treated,” he says.

Historically, doctors used whole-brain radiation, which temporarily eradicated tumors, but caused memory loss and did not have a long-term survival benefit. The new treatment – high dose methotrexate – does seem to work, MGH doctors say. In fact, Zenar Ambrozik is back to playing golf and says his progress has been “fantastic.”

Over the last three years, MGH has treated 30 patients and 80 percent went into remission. Half relapse after two years, but half of those can achieve remission again with re-treatment.

“This is very unusual for brain tumors,” says Batchelor. “This is a uniquely sensitive tumor.” The team is now working with nine other medical centers to broaden their research.

More information

For more information, you may contact:

  • Cure for Lymphoma Foundation, 212-213-9595 begin_of_the_skype_highlighting              212-213-9595      end_of_the_skype_highlighting; on the Web it’s www.clf.org.

  • Lymphoma Foundation of America, 800-500-9976 begin_of_the_skype_highlighting              800-500-9976      end_of_the_skype_highlighting or 310-204-7040 begin_of_the_skype_highlighting              310-204-7040      end_of_the_skype_highlighting; on the Web, it’s www.lymphoma.org.

Is there a doctor in the hospital

May 10, 1999 by Judy Foreman

Several months ago, when Lloyd A. Coombs, 61, a retired machinist from Springfield, was rushed to the hospital with congestive heart failure, he was surprised to find the person in charge of his care would not be his primary doctor but one he’d never heard of with a title he’d never come across: hospitalist.

Actually, he says “it was fine.” The hospitalist, Dr. Winthrop F. Whitcomb, director of inpatient medical service at Mercy Hospital in Springfield, kept his regular doctor informed, and best of all, was on the scene whenever Coombs needed him.’

“I liked it because I could see him every day, sometimes twice, three times a day. He corresponded with my family and everything,” says an enthusiastic Coombs, who now feels well.

In the old days, when care wasn’t so “managed” and patients stayed in the hospital longer, a primary care physician would often stop by to see his hospitalized patients early in the morning and maybe later as well. In between, he’d try to coordinate things as best he could from his office.

The plus was the continuity of the bond between patient and doctor. The negatives were the hours wasted as the primary doctor and hospital specialists chased each other by phone, not to mention the primary doctor’s disgruntled patients waiting to be seen in the office.

Now, hospital stays are so short that a doctor who might once have had 10 hospitalized patients a day may now have only two or three, sometimes even at different locations, making it less efficient to drive all over town to visit them while trying to take care of office patients as well.

In theory, the answer to that dilemma is hospitalists – a term coined in 1996 to refer to internists who, instead of seeing private patients of their own, spend all day in the hospital overseeing the care of other doctors’ patients.

There are now 3,500 such physicians in American hospitals, say Whitcomb and Dr. John Nelson, a hospitalist at the North Florida Regional Medical Center in Gainsville, who co-founded the National Association of Inpatient Physicians in 1997. The group now has 800 members and is gaining 100 new ones a month.

Though the hospitalist movement is growing fastest in California and the Southeast, hospitalists now practice in many Massachusetts hospitals, adds Whitcomb.

There’s not enough evidence yet to say how well hospitalist programs are working, but there is some:

  • A 1998 study of nearly 10,000 Pennsylvania patients published in the Annals of Internal Medicine found that costs were about 15 percent less for patients seen by hospitalists compared to those whose hospital care was managed by their primary care doctors. Although length of stay decreased in all comparison groups, the decline was greatest in the hospitalist model. Hospitalists’ patients also needed fewer readmissions.
  • A 1998 study of 1,623 California patients published in the Journal of the American Medical Association showed that a hospitalist model reduced length of stay and did not affect mortality or readmission rates or patient satisfaction.
  • Hospitalists also cut length of stay and costs at the Park Nicollet Clinic in St. Louis Park, Minn., according to an observational analysis in the February 16, 1999 issue of Annals.
  • On the other hand, an analysis of 16 Kaiser Permanente hospitals in California, also published in the February 16 Annals, found that although length of stay decreased, costs increased with hospitalist care. Researchers couldn’t explain this trend but speculate that patients may have been sicker.

Still, some observers say the advantages are many.

At Brigham and Women’s Hospital in Boston, for instance, a survey showed that patient satisfaction with hospitalists is as good or better as with traditional care, says Dr. Andrew Halpert, who runs one of the Brigham’s two hospitalist programs and heads inpatient care for Harvard Vanguard Medical Associates, a group practice in Boston.

And 30-day readmission rates dropped about 25 percent among patients seen by Harvard Vanguard hospitalists, he says.

Because patients in the hospital are sicker than those seen in office settings, hospitalists may be better at managing complex cases, proponents say.

“You get good at what you do all the time, and a hospitalist does inpatient care all the time,” says Nelson. “Last year, I cared for nearly 1,000 hospitalized patients. A doctor with my same training who practices mostly in the office and a little in the hospital has done hospital care a lot less.”

Still, there’s so little data that “we’re flying blind,” cautions Dr. John Eisenberg, administrator of the Agency for Health Care Policy and Research, the lead government agency for researching medical cost and quality issues.

“I like the idea of voluntary hospitalists – if I’m a doctor and I need to have someone [ else] care for a patient in the hospital and the patient agrees,” he says. “What I don’t like is mandatory hospitalists, if I think I could provide better care and I’m not allowed to.”

Dr. Harold Sox, chairman of the department of medicine at Dartmouth-Hitchcock Medical Center, agrees, noting in an Annals article that mandatory “hand-offs” of patients to hospitalists “threatens the internist’s identity as the physician who can care for the sickest patients in any venue. . .”

In Texas and Florida, the issue of mandatory versus voluntary hospitalists is becoming a legislative battle; managed care companies are urging laws to mandate the practice and doctors are generally opposed to it. The hospitalists’ association sides with primary care doctors, saying that the hospitalist system should be voluntary.

“I’m not sure this model is for everybody,” concedes Whitcomb of Springfield. “Some patients really want to see their doctor when they’re in the hospital, and some physicians want to retain their hospital responsibilities.”

But so far, “patients are telling us it’s okay,” says Nelson of Florida. “They’re willing to trade a familiar doctor and in turn get a more available doctor.”

The idea may increasingly appeal to more primary care doctors. So long as a doctor is kept in the loop, having someone else in the hospital all day to chat with patients and make sure lab tests get read is a boon, adds Nelson.

“And it eliminates the need to practice telephone medicine.”

Information

For more information on hospitalists, contact:

  • The National Association of Inpatient Physicians at 1-800-843-3360 or on the Web at www.naiponline.org
  • You can also read the February 16, 1999 supplement to the journal, “Annals of Internal Medicine.”

Beating anger

May 3, 1999 by Judy Foreman

Blame it on Aristotle, who believed that watching tragic plays led to a healthy catharsis of emotions like pity and fear.

Or on Freud, who, at least in his early days, also took the hydraulic view — that pent-up feelings, like steam in a pressure cooker, need release lest they cause hysteria or phobia.

Or on self-help gurus urging that anger be vented by yelling, pounding pillows or bopping people with hollow, plastic bats.

Wherever its provenance, the idea that vigorously expressing anger — even getting carried away with it — is both helpful and healthy has persisted for centuries, despite a stunning lack of evidence that it is.

Now, there’s a series of elegant studies that “ought to be a stake through the heart of the notion that every time you are angry, it’s better to let it all out,” says Dr. Redford Williams, director of the behavioral medicine research center at Duke University.

The research, published recently in the Journal of Personality and Social Psychology, shows that catharsis — verbal or physical venting — is “worse than useless,” says the lead author, Iowa State University psychologist Brad J. Bushman. “Expressing anger produces harmful effects — it increases aggression.”

Now, before you slam down the paper and mutter unprintable things about the mental health profession, take a deep breath. There’s also solid research showing that anger should be expressed, but in ways that are constructive — not destructive. Take a look, for instance, at the following:

– Road rage. One 30-year old New York lawyer, a patient of Raymond Chip Tafrate, a Connecticut psychologist, was a chronic tailgating, fist-shaking, horn-beeping driver. He’d leap out at lights and get into fist fights with other drivers. In therapy, he learned not to act on his anger by changing his thinking and understanding that most drivers who enraged him had not done so intentionally, and that he shouldn’t take it personally.

– Workplace wrath: A verbally abusive businessman with his own company went to Colorado psychologist Jerry Deffenbacher in distress. He was a big, loud man — intimidating by his presence but even more so by his outbursts. Two of his most senior people told him they were thinking of leaving because of his behavior.

In therapy, he learned to rate his rising anger on a scale of zero to 100, and when it hit 60, to tell whoever he was about to blow up at that he didn’t want to say things he shouldn’t and that he needed a “time out.” He then went into his office for 10 minutes, not just to cool down, but to rehearse mentally how to get his message across without being abusive.

He also invented an unusual trick that helped. An arch-conservative, he hated Bill Clinton. He promised himself that whenever he lost his temper, he’d wear a Clinton button for 30 minutes. Amazingly enough, it helped keep his anger from running away with him.

The new studies nail down the case against indulging anger.

In the first, psychologist Bushman used 360 male and female college students. Half were chosen randomly to read a fake newspaper article touting the benefits of catharsis; the other half read an anti-catharsis article. All were then asked to write an essay on abortion — pro or con, depending on their beliefs.

Students were then selected randomly to receive either a positive response to their essays, with comments such as “No suggestions, great essay!” or negative ones like “This is one of the worst essays I have ever read.” The negative responses were geared to making the students angry.

Finally, all the students were asked to rank a list of 10 activities, including hitting a punching bag, that they would like to do later. (In this part of the experiment, they didn’t get a chance to.)

The results were stunning: If people were not angered, they didn’t want to hit the punching bag, regardless of whether they were primed to believe in catharsis or not. If they were angered, those who had read the pro-catharsis article were twice as likely as those who’d read the anti-catharsis article to want to hit the bag, suggesting that “media messages can persuade people to vent anger,” Bushman says.

In the second study, Bushman’s team randomly assigned 600 college students, male and female, to read a pro-catharsis article, an anti-catharsis one or a neutral story. All were angered with negative comments about their essays and then given the chance to hit a punching bag.

Seven women declined, but all the others hit it. Each subject was then paired with an “opponent” (an experimenter) for a competitive task that offered the opportunity for aggression — blasting the opponent with a loud, unpleasant noise.

The students who read the pro-catharsis article were twice as aggressive as the others “and the more they liked hitting the bag, the more aggressive they were,” says Bushman. This is the opposite of what catharsis theory predicts — that venting should dissipate anger.

“People expect catharsis to work, they expect relief,” says Bushman. “But it never happens. In fact, people lash out more and more as if trying to get that relief.”

In yet another twist, the psychologists then took 100 students, primed them all to believe in catharsis and made them all angry. But this time, they were told to sit quietly for two minutes, instead of hitting the bag, before getting the chance to be aggressive in the competitive task. With just this two-minute time out, they ended up being much less aggressive than students in the previous experiment who had had the chance to hit the bag.

So what do these studies prove?

Just what many researchers, including social psychologist Carol Tavris, author of “Anger: The Misunderstood Emotion,” has been saying for years: Venting doesn’t work.

“The biggest, fattest cultural myth, the elephant in our living room . . .is that catharsis is good for you,” she says. “All you have to do is go to another country and realize that the kind of excess we take for granted is considered loss of face in Japan, childish in France and rude and selfish in England.”

What yelling and punching pillows does is let a person “rehearse” anger, she says, which only encourages more anger. It’s not much of a stretch, in other words, to imagine that rehearsing anger — like writing violent threats on a Web site — could contribute to the murders that tore apart Columbine High School in Colorado recently.

And mere venting means you never get to the bottom of things. Anger is often a “defense against feelings of helplessness and depression,” says psychologist Anne Alonso, clinical professor of psychiatry at Harvard Medical School. “So when you encourage the defense, you put a greater distance between the real problem and the patient’s ability to deal with it.”

Furthermore, indulging your anger can be bad for your health, especially if you’re male, notes Williams of Duke. While some data suggest that women who hold their anger in may be at higher risk of death from all causes, other data show that men who express it outwardly have higher death rates, he says.

Growing evidence, in fact, shows that anger, like other strong emotions, can directly trigger heart attacks, says Dr. Murray Mittleman, director of cardiovascular epidemiology at the Institute for the Prevention of Cardiovascular Disease at Beth Israel Deaconess Medical Center in Boston.

In 1995, Mittleman’s study of more than 1,600 heart attack survivors, male and female, showed that in the two-hour period after someone feels intense anger, heart attack risk more than doubles. Admittedly, this is a small effect because the baseline risk of a heart attack in a healthy 50-year old man is one in a million in any given hour; anger raises this to two in a million.

Another study of more than 1,300 male veterans showed that the most hostile had a three-fold higher risk of heart attacks than mellower men.

The bottom line, says psychologist Bushman, is to cool it. “Counting to 10 is good advice. If you are really angry, count to 100.”

Venting, in other words, “does not reduce the buildup of anger. Expressing anger only leads to further anger.”

SIDEBAR:

Coming to grips with taming anger:

People often think there are only two ways to deal with anger: venting or bottling it up. Neither works long term.

But there are things that do, says clinical psychologist Raymond Chip Tafrate of Central Connecticut State University, who has pooled and analyzed data on 18 studies of anger treatment, and by summer, will have analyzed data on 50.

The research clearly shows, he says, that catharsis not only doesn’t work but “may actually be harmful.”

“There is a kernel of truth in the expressive school,” says Jerry Deffenbacher, a Colorado State University psychologist. Some inhibited, overcontrolled people may be helped by learning to be “more noisily expressive,” especially in therapy, and to learn that their anger will not make the world crumble. But then they must move on and deal with their anger constructively.

For that, several methods — notably relaxation and cognitive-behavioral therapy — have been proven effective in studies.

Some relaxation approaches are modelled on treatments for anxiety, says Deffenbacher. The idea is to practice relaxation, then imagine an angering situation with increasing intensity until you can counteract your arousal with relaxation.

In the heat of an angry moment, he adds, the tried and true remedies of counting to 10, taking deep breaths and simply relaxing your muscles can also help.

In cognitive therapy, you learn to defuse anger “by thinking about your thinking,” says psychologist Albert Ellis, head of the Albert Ellis Institute for Rational Emotive Behavior Therapy in New York, and co-author, with Tafrate, of the 1997 book, “How to Control Your Anger Before it Controls You.”

Say that a co-worker frustrates you. If you think, “I don’t like this. She really frustrates me,” you’ll feel mildly angry. But if you keep fuming, “She is screwing up my entire life,” you’ll fan the flames and make anger last longer.

The problem really, Ellis believes, is an irrational belief that the world owes you something and that the other guy is “no good as a human being” because he’s not doing “what I consider the right thing.”

While many people who are chronically angry may have shaky self-esteem, that’s not always the case. Some research, in fact, suggests it’s grandiosity — inflated self-esteem and sensitivity to criticism — that causes chronic anger.

And what of anger that once had a concrete trigger — like childhood sex abuse — but becomes a crippling way of life? The trick here, psychologists say, is to acknowledge the anger, but to move on with your life and not get stuck in the anger forever. Still mad at your parents after 40 years? The tough-to-accept reality is that you may well have reason to be, but you’re only keeping your own life on hold if you focus on that, not forward motion.

Sometimes, of course, anger “is a signal that you need to act,” notes Dr. Redford Williams, director of the behavior medical research center at Duke University and author, with his wife, Virginia Williams, of the 1997 book, “Life Skills.”

If she hadn’t acted appropriately on her anger, he says, “Rosa Parks would still be riding in the back of the bus.”

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